POST 4 - CAR-T cell therapy

[casanova]

This is a very quick update for anyone who may be following my journey and possibly expecting a progress post in the next week or so.

Sadly my admission, due today, has been postponed. I received a telephone call around 3.30.pm yesterday afternoon when it was explained that the initial assessment of my bone marrow biopsy performed on Tuesday, 6th June, was inconclusive. The MDT team will meet again next Wednesday, 14th June, when they hope to have received a fuller report and they will then update me.

So a few more weeks of waiting. I restarted my Venetoclax and today unpacked my clothes, techie stuff, books, paperwork etc as I couldn't face it last night as I felt so disappointed. However, I had a reasonable night's sleep, woke to sunshine and birds singing so all is well and to be quite honest we are all used to waiting. I am lucky to be on this Trial.

I will post an update once I know more.

Maureen UK

[Justasheet1]

Hang in there.

[casanova in reply to Justasheet1]

Will do!

[Ghounds]

Oh how frustrating and disappointing as you had no doubt been preparing mentally/emotionally as well as packing your things. Here's hoping you can get started soon.

[casanova in reply to Ghounds]

You are right, it was dealing with emotional let down more than the practicalities.Maureen

[nvp815]

Lots of hugs Maureen. 💕💕💕

[casanova in reply to nvp815]

Thank you Nan x

[spi3]

Praying for the best

[casanova in reply to spi3]

Thank you.

[PaulaS Volunteer]

So sorry to hear that, Maureen. It's very hard when we're all geared up and prepared for something, and at the last minute it doesn't happen.

Hopefully it won't be too much of a delay...

Thinking of you,

Paula

[casanova in reply to PaulaS]

Thank you Paula. A few more weeks is nothing in the scheme of things.Maureen

[beanlake14]

you got this!!

[casanova in reply to beanlake14]

Absolutely.

[Thursday45]

That’s very disappointing for you. Thank you for sharing your progress and wishing you all the best for next Weds.

[casanova in reply to Thursday45]

Thank you.

[JLJC]

I can only imagine your disappointment. I like to look at these types of disappointments as a sign that it was not meant to be at that particular point in time. It Sounds like you have a good medical team making sure all is 100% before proceeding. Yep, back to waiting but with sunshine 🌞 and singing birds 🐦 😉

thanks for updating us!

[casanova in reply to JLJC]

They are a good team and better all the information is there before proceeding.Maureen

[bennevisplace]

Sorry you're on hold, hope you get the green light soon.

Maybe this will make the waiting seem worthwhile healthunlocked.com/cllsuppo...

[casanova in reply to bennevisplace]

Brian's post along with Robin's and others gives us all hope.

Maureen

[Big_Dee]

Hello casanova

Take a deep breath you WILL get there. Sorry for the huge disappointment, blessings.

[casanova in reply to Big_Dee]

Thank you, I'm sure it wont be too long now.

[Fran57]

Hello.

Thinking of you and praying for good news!

Fran 🤗

[casanova in reply to Fran57]

Many thanks Fran.

[thompsonellen2]

Super frustrating. Thanks for keeping us posted. Hang in there!

[casanova in reply to thompsonellen2]

As the journey progresses I will post again.

[CycleWonder]

Maureen,

Waking up to birds singing and sunshine is a wonderful to describe how each day is a new day. It’s more difficult somehow to adjust in the dark.

I will be thinking of you this coming week.

Patti

[casanova]

That is so true Patti, I love blue skies so much more uplifting than grey clouds.

Maureen